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Still Learning

Hi all,

I am a 26 yr old male...diagnosed in May of 2008. Since then it has been a rough road. It all started with a bad fever...(104) for about 5 days before they finally tested me for Lupus. it was accually my idea....i have had the sympotms off and on for about 3yrs. In the hospital they we injecting the predasone thru the IV......it worked fast!!

After being release from the hospital it was hard to deal with the disease , mainly because my doc sucked. He just wanted to get me off the steroids and call it good.

For about a month, i was slowly getting off the steroids and put on plaquinel and almost the next day i started having vision loss in my left eye. Of course the Doc automatically blamed the plaquinel!! After reading about it...we all know that it takes along time for the plaq. to start bothering the vision.

Instead, i lost total vision in my left eye. By the time i was referred to UCI Medical Center for a second opinion, it was to late;. the new (and awsome rehmo) found that the Lupus has caused Anit Phospolipid Syndrome. This is a clotting disorder. What happened was a blood clot formed in my left eye and killed the optical nerve and retina.

Over the next few months, i have slow gained my weight back (lost 25lbs in first week of diagnosis) i am almost off the steroids and sometimes i almost feel normal.

I am still upset that i am 26....feel 100...blind.....sore.....tired and still pissed at the first rehemo.

Sorry its so long, and it might not even make sense but it just felt good to at least type out the last 5months of my life!!

How has your sleep been. Restless, sleepless contribute a lot to our pain and fatigue...

I understand the feeling of being 100, tired..... exercise, egads, eh?... but have you tried any for of it. Swimming, walking, yoga, Pilates. Joint friendly. It also helps with the pain and fatigue. Muscles and joints that don't move become rusty, weak and cause more pain and exhaustion.....find an activity that you will enjoy even if it is just stretching to start. Lay in bed and stretch your toes to the end of the bed and fingers to the head board...hold, release...Oxygenates the body...go a head try it...try it standing...

I swam this summer and just as of yesterday I started to bike ride.

Has anyone spoke to you about healthy eating, supplements like Fish Oils, Vitamin B and etc?

How is the stress in your life outside of the diagnose? Managing it well?

Maybe you have to find peace and forgive the doctor for his careless treatment, so you can move pass being pissed. That feeling could feed the Lupus..causing symptoms....

Need ideas on how to handle Lupus in conjunction with your medical care, read about..we all use different things that should be discussed with your doctor, especially vitamins and herbs.

I dose with Requib for rest leg syndrome. Plaquenil. Protonix for my Gerdie. Lortab for pain. Newest addition Lunesta. My drugs are always changing, trying to find the right recipe to make me feel my best. If something isn't working, advise your doctor, their are other treatments, drugs, programs to help us with this disease.

What works for me, may not for you and vice versa....

Has its been suggested to avoid processed foods, fast foods, the white stuff, sugar, white breads, cakes and etc. Many great substitutes out there. I'd be happy to share...

Do research, read on...we have to be aggressive, armed with knowledge to ensure we receive the right care...be proactive.

welcome

hi, I understand how you are feeling.I feel like a little old lady. I am 22yrs old and I am a full time college student and work full time. I cannot run like I use to but I try. I does get frustrating at times but I find the good and praise it. even if it is I can walk or talk on the phone or even having the ability to go to work in the morning, because at one time lupus had me so down I was unable to do all of those. Just find something to keep you occupied. I love music so much, so i am learning to play the guitar. You can still have fun but you just have to be smart about it. make sure to take vitamin c & d, calcium, and others. also look up diets too. LAUGH, LAUGH, LAUGH........ WATCH MORE COMEDIES!!!!

"Dance like nobody's watching; love like you've never been hurt. Sing like nobody's listening; live like it's heaven on earth."

Gosh Oluwa - You swim and ride a bike. Hope I can do those things again one day! The thought of trying to pull on a swimsuit without falling over makes me frightened to death :shock: - folks would think I was having a seizure in the cubicle. Would love to go back to yoga but can't get down onto the floor and even if I did I wouldn't get back up again :roll: You have given me hope that maybe one day, after diagnosis and then proper meds maybe life will get back to normal again.

Maybe there are better days to come for us Calaj26 - more difficult for you because you are so young. Old codgers like me kind of expect aches, pains and stiffness to settle in even without illness but you have more than your fair share of probs. It's just not fair is it? I hope that things improve for you really soon and if it takes a while then there are lots of very kind and warmhearted folks hear to listen and support you.

Hi Calaj26,
Welcome to the site. I am sorry to hear that you lost your sight. I would be mad at that other doctor too. It is sad when doctors treat people the way you were treated and it leads to something very bad happening. I hope that you never have anymore problems with doctors in the future. What is sad is the way a lot of doctors treat people that are sick from Lupus. There are a lot of horror stories out there that have happened to me and some of the other folks that come in here. There are people that come in here that are still waiting on a diagnosis, because their doctor will not diagnose them. It is sad indeed. Please keep posting ok.

Hugs,
Kathy

Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

I swam like I had a dorsal fin all summer. Exercised without all the pain, just some... because the water enveloped my body in its wet arms...

Felt so good to move without pain, without the weight of fatigue. It energized my spirit, to feel my body move and grow stronger from the core outward.

If, I wasn't so self-conscience I would continue through the year at a public, fitness center or YMCA pool. Still slightly impaired self concept from an eating disorder I had for years. That is why I moved to the bike, no public pooling..still working on doing it daily..not succeeding, but I do my daily stretch routine..oxygenates the body and helps my spirit to feel good things..

You will be able to...try a bit now. It is important when feeling well or not to still get some form of movement, exercise...it will help to feeling better, though it may not seem it would. Start small, find something easy as sitting in a chair and stretching. Strong core, strong muscles will help hold and protect those aching joints. Takes some of the burden off of them....

Thank you

Hi all

Just wanted to thank you all for the kind words. The support of this site is amazing.

Not much has changed with me. The uncomfortable pain in my joints has not gone away. It has accualy gotten worse. I dont get it. I am doing all that i can and that i have been told to do to stay healthy.....but it is still evident that i am sick. Or am i not sick and the Lupus is just going to be with me all the time?? Anyone else always in discomfort but not sick??

i really wisht that i could do all the things that you Oluwa....but i cant even work like i use to. I cant keep up with my crews, and it is hard for me to get use to. My crew gets all over me when i push myself, i have to learn that i cant always go all out at physical things anymore......or for the time being, i really hope i can again some day.....

Amyway thanks again to everyone for the post.....please keep posting i enjoy the support and stories of everyone else.......

Hi CALaj26;
Like you, I am ALWAYS in discomfort of some form..but not always sick! I long for the day when I can wake up and have nothing hurting, nothing inflamed, no chronic fatigue, etc. etc. etc. I know that I may very well never see that day.
I have Lupus, Fibromyalgia, Raynaud's, and several other co-existing illnesses. So, while there is always some problem somewhere on my body, I am not always sick!
We cannot resume the activities we participated in before our disease; at least not in the same way. Yes, we have to modify everything that we do and we have to come to terms with the fact that we are not going to go back to what we once were. We must make the best of where we are now and continue to do all those things that will prevent us from getting sicker. So, the precautions that you speak about that you've tried...don't feel that they've done nothing for you. They will not make you well, but they may go a long way in preventing you from getting worse.
For me, being in discomfort every day is a part of my life. I just work very hard at not getting sick or not getting sicker!